How to Navigate Hard Conversations After a Terminal Diagnosis
Receiving a terminal diagnosis can understandably have an immense psychological impact on the individual and their family and friends
Dr Esther Ramsay-Jones, who works in palliative care, offers advice on how to have difficult conversations around death and dying
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Learning that someone we love – perhaps a parent, partner, or a child – has a terminal diagnosis is very hard to assimilate and to make sense of. At such a time, the certainties we may once have known are upended and, though unique to each person and each family unit, it is likely that news of a life-limiting illness will stir up a range of powerful feelings.
Well-documented, and cited, is the work of psychiatrist and writer Elisabeth Kubler-Ross whose five stage model of grief has generally been applied to the bereavement process. Initially, though, she developed her theories of grief while working directly with patients living with long-term conditions and noticing the changes they experienced in anticipation of their own deaths.
Five stages of grief before death
Grief is our natural response to the loss of a person with whom we have had a valued attachment and connection. It stands to reason then that faced with news of the impending loss of such a figure in our lives, we begin to anticipate this absence and to feel it in an imagined way.
In palliative care, we call this anticipatory grief. To borrow from Kubler-Ross’s model, it is not uncommon for this anticipatory state to bring about intense feelings.
In the weeks and months following a terminal diagnosis, family and friends often report the hard emotional work of processing what the impact of a death may be, and the impact of living alongside someone who is dying. Ross’s model is often misunderstood to be sequential, in stages, yet those experiencing anticipatory grief are more likely to oscillate between the following states of mind, moving backwards and forwards on different days and weeks:
This may manifest itself in furious activity or controlling behaviours, or conceivably a relentless positivity, in which any signs of sadness is split off from the conscious mind.
Often people report the unfairness of a situation and begin to question long-held faiths, or the anger about the situation is displaced and projected into other parties – professionals, relatives, siblings and so forth.
At times it can be very hard for partners, children or parents to summon up any sense of hope. Living in the face of another person dying is for some an unbearable reality that can leave people feeling flat, out of control and debilitated.
This might involve posing a series of questions to oneself and to others, such as ‘What if we had caught it earlier? What if I had paid more attention to her pain?’. Again this might stem from sources of guilt about a relationship in general, or a fear that you have never done enough. But more ordinarily out of an illusory belief that life is permanent, and can be fully controlled by individual choices.
Often individuals are able to come to a level of greater acceptance, particularly when bearing witness to someone’s decline and, perhaps more easily, within the context of relationships and families where regrets, loves and fears have been expressed.
Addressing the elephant in the room
It can, of course, be so hard to have honest conversations about death and dying. In the West, until more recent times there has been a sense that death is a taboo subject. However, it is often the case that when people are able to say what’s on their minds, and make contact with their understandable vulnerability, intimacy and connection can be found. As a result, a dying person may also feel less isolated with their own anxious thoughts.
Of course, inviting a family to think about their situation in the face of one member’s dying days is not without its challenges. The general thinking in a palliative care context is that discussions around dying and death should not be avoided. Indeed, there is an assumption that if we were more open about talking about death and dying, and had the requisite skills to talk and to listen to the concerns of the dying, there would be an improvement in both end-of-life care and the experiences of bereavement.
Often patients and families are relieved that the elephant in the room is addressed with care, and an acknowledgement of the distress it causes.
How do we have these kinds of conversations about death and dying without professional intervention?
Sometimes we have to feel our way into it. We have to notice who might be ready to talk and to listen, and who may not. Here are some things to think about if you are struggling to have much-needed open conversations:
- Find a quiet or comfortable space to talk. Sometimes walking and talking is a good way to be able to listen attentively and without distraction: this may also make the experience feel less intense and formal.
- Think about your relationship – is it emotionally open or do you tend to hide feelings from one another? Who does this benefit? Before launching into a difficult conversation, have respect for different people’s defences and coping mechanisms
- Would it help to build intimacy if you were more open now?
- Be honest. Yet find balance: if you feel that you would like to talk things through, but are struggling to do so you may begin to feel like a pressure cooker, as if you are carrying all the anxiety for a family unit. There is a lot at stake in keeping silent. But try not to overwhelm your loved one with your anxieties. A terminally ill person is likely to be managing their own fears. Perhaps, ‘I am worried about how we are going to get through this together if we don’t share what’s on our minds… We are facing a very painful situation together, and if I would like us to talk more if you feel able to do so… I’ve noticed that you aren’t sleeping…can you tell me what goes through your mind late at night?’
- Communicate that you might be robust enough emotionally to be able to hear how a person would like to be cared for; what kind of funeral he or she may wish to have… Palliative care professionals (such as community nurse specialists) help with this in a supportive way. Often, when we slow down and breathe deeply, a sense of calm comes over us, making it easier to listen and to take note of our own process.
- If you feel unable to bear the reality of a person dying, seek counselling or psychotherapy for yourself. Once you learn to articulate how you are feeling, and to take in support for yourself, with a therapist, you may be in a better position to absorb some of the fears of a partner or parent or child, which you can process each week in a safe space. This is not a sign of weakness but an intelligent and thoughtful choice at a difficult time.
- Goodbyes are not simply words uttered. A good enough goodbye is a communication that both parties have recognised the value of one another. Wherever possible try to tell someone how much he or she has meant to you. An expression of love, when meant, is likely to help in the grieving process – as a way of mitigating against regret.
Dr Esther Ramsay-Jones is a lecturer in grief, bereavement and dying. She has written two books, Holding Time: Human Need and Relationships in Dementia Care (2019) and The Silly Thing: Shaping the Story of Life and Death (2020), both published by Free Association Books.